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Tuesday, April 17, 2018

The World of Working Bodies

Before heading off to bed on Sunday night, my mom and I were standing in our kitchen, discussing my uncooperative, melodramatic lungs, which seem to have decided that if there is a single particle of pollen in the air the only appropriate response is to cease all breathing operations. "It's fine," I said a few times, probably trying to convince myself more than I was trying to convince my mom. We exchanged thoughts about medications and the season of spring and my lung function (or lack thereof).

"It's fine, it's just... It's so annoying that no one else is dying," I blurted out. I instantly felt bad and followed it with, "I don't want anyone else to suffer, but it's annoying."

This was definitely an atrocious, no good, all-around cruel thing to say, but it was true, and my mom was so quick to agree with me and to empathize that I felt a little bit less like an unforgivable monster after she enveloped me in a hug. I am genuinely confused when I walk through campus and see people soaking up the sun outstretched on grassy quads, breathing in pollen as carelessly as they want. I am equally bewildered by the I-can-take-a-Claritin-in-the-morning-and-be-mostly-okay population. I can barely scurry from one building to another without losing function in my smaller airways, and if I have to be outside for any longer I have to build in time for a nebulizer treatment. I do not understand how other people's bodies allow them to live so freely. I do not understand why mine has to react as though the world is ending just because it is springtime.

Of course, I understand that there are many things more dreadful than wavering physical health, and I recognize how egocentric and ridiculous my remark was. There are countless tragedies that hold much deeper sorrow than the inflammation in my body. I know that almost everyone is hurting, and that emotional pain is often much worse than physical pain. But when you are struggling for breath and the other people in the room are clearly not, it is difficult to remember these fundamental connections to broader suffering and to avoid feeling isolated. When you are in a codependent relationship with albuterol and Zofran and Benadryl, it is almost impossible not to wonder how everyone else seems to be existing in bodies that are not constantly trying to shut down.

Yesterday went progressively downhill from a health standpoint. By the evening, I was not feeling like myself at all. When I looked around at my classmates and friends, I found myself once again annoyed that they were not in my world. Or perhaps that I did not have the option of entering theirs. Or perhaps that no one else seemed quite as concerned about how quickly they could exit the room if nausea overtook them, or had their hair braided back because they were worried about throwing up, or could not breathe deeply no matter how hard they tried, or felt every aching bone in their body.

When I returned to my room for the night, after what felt like a marathon but was really just a busy Monday, I took a Come-to-Jesus Shower. I like to think we all take these at times, but if you have not, it is basically when shampooing your hair coincides with realizing what an awful person you are, and by the time you are conditioning the ends you find yourself creating a mental list of all of the amends you need to make in order to be a less terrible human being. Last night's Come-to-Jesus Shower, which was unexpected but not unlikely given the circumstances of yesterday, was entirely too long and overly emotional. The only redeeming part was that because I am on a maximum dose of Benadryl every four hours, I have no tears in me, and we thank God for that, because I do not think my lungs could have handled a breakdown.

Warm water loosened my joints and soothed my muscles and, despite my stubborn resistance, softened my heart. Gradually, I found myself no longer quite as annoyed that no one else seemed to be dying. I was simply grateful for everyone who reached out despite my self-centeredness and absorption in my own pain. I realized that literally all day people had been trying to enter into my world, and I was pushing them away and then blaming fate or God or some other responsible force for the enormous space between us, when in reality I was the one drawing all of the boundaries. Perhaps I was afraid of trying to connect my world with the world of someone healthier and failing. Perhaps I feared that failing would make the gap seem unbearably wide. Regardless, I was not brave enough to try, and so I cut off concern and pushed away compassion and convinced myself that there was absolutely no way that I could have a meaningful conversation with anyone who did not feel like their body was decaying from the inside out. Perhaps this is where my lungs get their drama from. When my Come-to-Jesus Shower concluded and I returned to my room, I sat at my desk in my favorite pajamas, feeling defeated and mushy and wrong and grateful all at once, and typed out simple apologies to a couple of people who received way too much harshness and way too little gratitude from me. Water droplets from the tips of my hair crashed onto my phone, clouding the screen, and as I wiped them away with the sleeves of my pajamas I found myself with extra time to hope that if friends and family knew that I was well-aware of what a jerk I was, they might at least be a bit less hurt by my lack of kindness.

Level of annoyance with my lungs
when this picture was taken: 9/10

Sometimes I feel like there are all of these people who are great at being sick, who are making the most of difficult circumstances and are learning and growing and thriving, and then there are those of us who are just trying to make it from one point to another without everything falling apart. Way too often, I seem to fall in the latter category, wondering why everyone else's bodies seem to respect their right to exist while mine attacks itself for no discernable reason. It is not a fair question to ask, but it is a difficult question to push away. It is not a matter of wondering, Why me? but rather revolves around a more external question, Why not all of you, too? My favorite Tulane nurse taught me to check my nails when I am struggling to breathe, instructing me to nebulize without waiting for a convenient time if they appear bluish in color. Sometimes when I see other people look down at their nails I wonder how their blood oxygen is, and then I remember that this is not what most people are thinking about and I begin to feel like I am existing in a reality that bears less resemblance than I would like to the realities of those around me.

I have been thinking quite a bit about what my reality is lately, especially since I am sort of in an odd middleground state with my health. I have found entering the hospital attached to my college campus to be a strange experience. As I walk through an unmarked side door for appointments or scans, I cross over from "student" to "patient," and I always wonder which is the truth. When I step onto the speckled tiles that make up the gridded hospital floor and breathe in the air that smells so different from the fresh air of the college campus, I find myself simultaneously horrified and relieved. I wish I could exist solely in the "student" space; the hospital makes me feel icky and scrutinized. At the same time, when I am whisked into this community of patients, I think, Oh, thank God, these are my people. I don't have to have it all together here. I feel blessed camaraderie with the other children and teenagers in the pediatric specialty waiting room, as we collectively try our very best to exist among the World of Working Bodies yet repeatedly find ourselves in the sterile and invasive World of Stethoscopes and Needles.

So this is the truth of my being chronically ill: sometimes I find myself inexplicably annoyed by the comparatively good health of others, which is most likely the mark of a horrible person. I am sure there are many who are much sicker than I am who feel the same way about me. There is some comfort in knowing that whether you are healthier than me or sicker than me, you will leave this post certain that I often fail to be a good human, daughter, and friend. I am not the hero of this story, despite how frequently I wish I could be. This does not mean that I punish myself indefinitely whenever I think or say or do something that is unkind, but it does mean that I take Come-to-Jesus Showers, and I convince myself of the existence of imagined boundaries to spare myself the pain of discovering any real ones, and in my head I criticize the World of Working Bodies to make myself feel better about my exclusion from it, and I learn again and again to apologize even when admitting my unimpressive response to the cruelties of my illness is humiliating.

Your feelings and thoughts make complete sense to me. Not because I can relate to your health issues, but I do understand the feeling of being annoyed that others don't have to deal with what I have dealt with (am dealing with.) It does not make you a bad person. It makes you human, and it helps people like me realize that we all have our moments, days, months and even years that we sometimes wish we could rewind or erase. When my children were very young and their dad and I divorced, I often felt like I was the worst mom in the world, and I was often annoyed with "happy couples" when I would see them in public, or even in my family. It just felt unfair. Not that I wished any harm to them and I certainly did not want them or their children to have to go through what I was going through, but I sure did wish someone else would understand how awful the everyday things that innocently and naturally happened around me could make me feel awful about myself. The big difference is, of course, I had more control over my outcomes than you do. Oh how I wish you could will yourself into good health permanently. Thank you for your willingness to continue to be candid with your readers. You are loved and admired by so many, even when you are feeling annoyed with healthier people. In my opinion, you get to do that. You've earned it.

Thank you, Paula. I think you described perfectly the feeling of not wishing bad things on other people, but wanting understanding. I really appreciate you sharing this - it certainly makes me feel a bit less alone, at least in this realm! I am very grateful for your own candidness and passion - you are certainly someone I look up to. Thank you for being you.

Meet the Author

Rachel Sauls

Welcome! I'm Rachel, a 19-year-old college junior from North Carolina. I blog about juvenile rheumatoid arthritis, life, and all of the intersections between the two. I'm so excited that you're here and I can't wait to get to know you!